Setting calorie goal as an amputee

kitzykarly

I got rhabdomyolysis with compartment syndrome in Jan, resulting in a double below-knee amputation. Now I'm wondering the amount of calories to maintain and how much to consume for weight loss. I read something about the weight of the limbs I lost and weight before, and all these numbers I just don't have. I'm not sure how much I weighed before I got sick, and have no idea the weight of the removed limbs (was the furthest thing from my mind). I think they weighed me for dialysis, at one point I recall hearing 60 kg (pre-surgery), but I was pretty out of it, and also severely bloated from the kidney failure. The last weight I got was 117 lbs upon leaving rehab, but I think I've put on some and haven't been weighed since. I was 5'2 before, but no one has bothered to measure me since.
Should I get someone to measure me laying down and base my caloric intake on height? I kind of think not, because if an arm is amputated, height is not lost, but bodily requirements for the missing arm would still decrease, right?

cmtigger

Go with your current weight and activity level and adjust from there once you see how your body does.

If you are really worried, talk to your doctor.

VintageFeline

It's an interesting conundrum. As above, I think you just have to go with real world results. Pick a number, log as accurately as possible so you can nail your numbers and see what's happening in two months. Are you able to weigh? If not, use body measurements instead, waist, upper arm, thigh. It sounds like you were relatively petite and don't have a vast amount to lose so progress could be slow so I think you do need to give it a good amount of time to really measure results.

Another consideration is if you are using a manual wheelchair, that would take up the slack where you might be missing the calories from walking.

Good luck, it sounds like you've been through a lot and aren't long into the adjustment period of being a double amputee. I can't even imagine how you adjust to life afterwards.

GemstoneofHeart

I wish you the best of luck! I don't have any answers for you but I hope that you are successful in your journey!

CMB1979

I think you'll just have to go with a trial-and-error approach. Set it at a reasonable level- say around 1600-1800 cals. If you gain weight, reduce it. If you lose weight, increase it. Do this until you find where you're stable for a few weeks. That'll be maintenance. Then go from there depending on your goals.

lorrpb

Do you have a dietician on your care team? That would be a good question For them. Wishing you the best.

kitzykarly

No, I stopped seeing my dietician when I was taken off dialysis. And good suggestion on taking measurements! I guess maybe I'll use my original height and start by taking a couple hundred calories off. Although, what if that puts me below 1200? Would that be ok considering I have less body than the average gal? And maybe increase it on days I work hard on my prosthetics?

asteriskthat

lorrpb wrote: »

Do you have a dietician on your care team? That would be a good question For them. Wishing you the best.

I was reading an article just an hour go on BMI and one of the parts was how it isn't practical for exceptional circumstances like this. They recommended consulting a dietitian.

paperpudding

If you are small and sedentary and your calculation puts you under 1200, I am sure this could still be be ok.

You are going to be one of those outliers, for obvious reasons, for whom lower number than the usual minimum may be appropriate.

cs2thecox

It may not be entirely accurate, but it might be worth wearing a heart rate monitor for a whole day, and seeing what that gives your daily calorie burn as. I'd recommend putting in your original height, along with a weight a bit below the 60kg, as I think almost all heart rate monitors worth a damn need those stats to provide an estimated calorie burn. For the standard algorithms to work, you're going to need to put a weight that would have corresponded to your original height.

I have fairly bad muscle wasting in my lower legs (neurological disease), and the formulas are noticeably wrong for me already, as there's an implicit assumption about how your weight is distributed. My legs are probably a couple of kilos too light each, so if I'm a "perfect" weight based on all the formulas, then I'm probably carrying 4kg too much from the butt up. Your adjustment without prosthetics would be bigger than mine, but maybe there's a way of finding out if your prosthetics weigh about the same as "real" legs, then you could just always weigh with your prosthetics?

It's more hassle, but seeing someone to get skin caliper measurements done might be a more useful metric than weight. Even if they don't plug the readings into the formula that gives your body fat percentage (it needs weight and height), it can still show where you are carrying a bit of excess, and where there's really nothing to spare. I'm not too convinced that the formula gives my body fat correctly because of my weird legs, but at least I have the actual skin fold measurements to show that I've shifted some fat off my butt!

I'd also be ultra careful about going too low calorie. If your kidneys have already taken a beating, then you don't want to constrict your diet in a way that puts any further stress on them. Depending where you are with your prosthetics and/or wheelchair, you may be burning quite a lot, particularly if you're still learning and not all the way there with efficiency yet! As others have said, input from a dietician could well be beneficial, but otherwise trial and error is the way to go. I'd reckon 1,500-1,600 is a fairly arbitrary but not ridiculous place to start.

Also, I just saw someone posting about his progress as an amputee bodybuilder today - @chriswoodwardclark7531
so it may be that there are more people on MFP who could help you found an amputee community!

All the best with everything, and always remember to take what the doctors say about what you can and can't do with a pinch of salt. I've found that they tend to present the worst case scenario, but there is no reason why you can't overachieve!

kitzykarly

Great, I'll dig up my hr monitor and see what I get! It'd be interesting to do a wheelchair only day, and then a wheelchair and prosthetics day (since I've just gotten them I can only wear them for so long). My prosthetist said that one prosthetic uses 60% more energy, and with me it'd be doubly so. I think they're supposed to be lighter than my poor dead feet, but I'll double check that when I go back this week. They certainly feel very heavy, though!

As for diet, I started eating meat again to comply with the restrictions of a renal diet, but I've been off of dialysis for several months now, and my nephrologist cleared and endorsed a return to a vegan diet kidney function tested at 92%, but there is some scarring. Do you feel you need to adjust calories from the standard recommendation due to your legs? And do you have mobility issues?

It would be great to talk to other amputees on here and compare notes and experiences! I did look for a group, but there doesn't seem to be one yet. I just wonder how many people on here are amputees.

cs2thecox

Yes to mobility issues.
I'm still up and walking, but that's thanks to 3 sets of surgery and an ankle brace! My toes don't wiggle, I can't really move my ankles on demand (although they do move when I walk and things), and my range of ankle mobility is hilariously terrible so my squats are barely even half squats. I can't really do stairs without a hand rail, I haven't been able to run for about 20 years, and I certainly can't jump or anything. My walk is noticeably odd too.

But I keep plodding on. I have a paralympic classification for rowing, so I can race against other people with wonky legs (current British indoor champion! No-one else turned up to race, but shhhhh!!), and I've done a whole ton of stuff that the doctors said I couldn't/wouldn't/shouldn't do. I figure that if I never bothered trying, I'd just sit on the sofa and then I *would* have been in a wheelchair by 21 like they said I might be.

I don't think my calories are too different from average, because my mobility inefficiencies mean I burn more walking than a normal person but I suppose my legs don't need so many calories because of the lack of muscle. I guess it roughly balances out or something. I just make sure I stay active enough to get away with eating a good amount of food!
I started lifting weights about a year ago, and with my trainer we've worked out that I'm maintaining happily on 1,900-2,000 a day. I was a bit leaner in May (before I went to the US on holiday and ate ALL the doughnuts!) but I'm basically happy where I am now, and get to eat a bit more food so that's great.

Well done on getting off dialysis and getting your kidneys going well again! That's great news. Particularly if you're cleared to follow the kind of diet you enjoy and feel good on.

I'd say just go for it and start a group - people might come out of the woodwork, you never know! Or they may already be something on facebook or whatever. The internet's great for that - there's literally a niche for everyone. I've also found that a lot of groups for people with, let's say, the slightly more unusual requirements are really welcoming, even if your situation isn't quite the same as theirs. (There used to be a really great forum for people with my leg condition, but sadly the US organization for it decided to shut it down and focus on their facebook presence instead - it's never been the same. I miss it!)

antonellisfam

Wow, you went through the ringer, as it were. As a nurse, I wish I could give you some concrete help but the one time I came across a similar circumstance, I was unable to get any useful advice. We had an individual admitted to the ICU with anemia. When I weighed him and estimated his height (double amputee since age 18/he was about 80 yrs old), clearly the BMI was quite off. When I then estimated his actual height, it also didn't seem correct. I would agree your best bet is trial and error, trying to keep track of your intake and so forth. I hope there are some amputees, perhaps former military, who are MFP users. Good luck.